CHOICES3: Sickle Cell Disease Parenting CHOICES

Launched by UNIVERSITY OF FLORIDA · Mar 22, 2022

Keywords

ClinConnect Summary

The CHOICES3 trial is studying how to help adults with Sickle Cell Disease (SCD) or Sickle Cell Trait (SCT) make informed decisions about having children. The goal is to support individuals and couples who are at risk of having a child with SCD and are planning to conceive within the next two years. This study will use an online program to gather information and provide personalized support to participants. They aim to involve around 430 adults aged 18 to 45, who can read and speak English, and who want to avoid passing SCD to their future children.

To participate, individuals must have a confirmed diagnosis of SCD or SCT and should be planning to have a child soon. However, those who cannot participate include individuals who are legally blind, have undergone certain surgeries that prevent them from having children, or who do not wish to have more children. Participants will engage in a web-based program designed to provide valuable information and support throughout their decision-making process. This trial is currently recruiting participants, so if you or someone you know fits the criteria and is interested in learning more, it might be a great opportunity to get support in planning for a healthy family.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Diagnosis of SCD (HbSS, HbSC (Hemoglobin Sickle C Disease), HbS-beta-0 thalassemia, and HbS-beta+ thalassemia) or report of SCT (SCD is Hgb electrophoresis confirmed; SCT evaluated by SickleScan);
• • Able and intends to conceive a child in the next 2 years (first child or another child);
• • Speaks and reads English;
• • 18 to 45 years;
• • At-risk for having a child with SCD (i.e., sexual/ reproductive partner has SCD, SCT, or unknown sickle cell status); and
• • Wants to avoid the risk of a child with SCD.
• • The age range is based on typical reproductive age for SCD where median survival is 42 years for men and 48 years for women.
• Exclusion Criteria:
• • Legally blind;
• • Physically unable to complete the study questionnaires or the intervention;
• • Report health history of hysterectomy, tubal ligation, medically or surgically induced menopause, or vasectomy that would
• • Prevent ability to bear children;
• • Report a desire to remain childless or have no further children;
• • Report knowing or being a relative or friend of a participant previously enrolled in the study, or
• • Previous participation in a CHOICES study.